Thursday, August 31, 2017

I am a professional disability advocate in my mid-thirties. I am also autistic and have various learning disabilities/mental health diagnoses. I have always been very lucky in that I live in a state that gives me good access to healthcare, despite the fact that I am very low income.

I was a personal care aide for many years, and due to this I developed back problems. In the spring of 2016, they became significantly worse. I tried many, many therapies and medications. I was eventually diagnosed with an extruded disc, and had surgery in January, 2017.

Although my surgery was supposed to be routine, and all of my health care practitioners knew in advance about my unique neurology, it quickly turned into a bad situation: I reacted very violently to the anesthesia, then had an allergic reaction to the opioid painkillers (which did not work otherwise). I ended up having two ambulance rides, two emergency room (ER) visits, and an overnight hospital stay over the course of 72 hours. None of this was pleasant—I would even say it was hellish at the time—but I also ran a 103 fever for unknown reasons, and so spent part of the experience hallucinating.

I would like to make clear that I am very grateful for the care that I received at the hospital, and I understand that the doctors and medical personnel were acting in my best interest while also running a busy city ER. However, as an advocate, I would also like to ensure that what happened to me never happens to another autistic person.

The majority of online materials I have been able to find on healthcare and ER visits by autistic people assumes that 1) The autistic person is a mental health crisis and 2) that they are not their own guardians. These materials are also rarely written by actually autistic people. We need better materials.

I am therefore writing these guidelines so that when my neurodivergent friends and I break our ankles, wrench our backs, cut the ends of our fingers off, or have an asthma attack or a seizure, we can know that we are being seen by people who are making a sincere effort to understand how our unique neurology affects our ER and hospital experiences.

Introduction

Autism is a neurodevelopmental condition which often bring communication difficulties, sensory processing problems, and executive functioning deficits. In addition, even the most intelligent, talkative autistic person may lose their ability to speak or communicate clearly when they are in distress.

Autistic people come to the ER for the same reasons as any other patients—they are sick, and they need immediate assistance. But because ERs are strange, confusing, often hellish places, autistic people of all abilities may behave unpredictably and even violently when brought to the ER. Autistic people who have more intense communication support needs, especially, may not be informed why they are there, nor what is going to happen to them, and may therefore get restrained for routine procedures.

It is likely that higher-support autistic people will come to the ER with family or staff members, especially if they are not their own guardians or medical decision-makers. Be sure to talk with caregivers about preferred communication strategies, so the autistic patient can cooperate with the medical care they need, to the best of their abilities.

Establishing reliable communication is important, since just because it seems that an autistic person may not seem to understand something does not mean they do not. Never assume anything about an autistic person's behavior, except that they are doing the best they can in circumstances beyond their control. Some autistic people may be unable to stop their bodies from behaving in violent, unpredictable ways, even though their minds are telling them to stop. Some people who use communication devices may lose their ability to do so in a crisis because their bodies are so overwhelmed.

Communicating with Autistic People in ERs or Hospitals

Three Autism-Specific Communication Terms to Know:

Echolalia is when someone echoes something they, you, or someone else has said.

Stimming is strong emotions or other feelings or urges resulting in physically repetitive movements, often for happy, coping, or self-soothing reasons.

Scripting is when a person repeats or quotes from a source such as a television show, to express themselves when they cannot access the words they need, or for pre-prepared responses.

Best Practices for Communicating With Autistic Patients:

Speak directly to the autistic person, even if they have a helper or family member with them.

Do not ask, ‘How are you?’ This is an absurd question, because if someone is in the hospital it is because they are not well. Instead, ask concrete questions, such as, ‘What hurts?’ or ‘Why did you come to the ER instead of waiting for your PCP/the clinic to open?’ or ‘Are you having trouble breathing?’ or ‘Do you feel like you are going to throw up?’

Speak slowly, in clear sentences, and give the person plenty of time to respond.

Do not expect eye contact. It is both unnecessary, and uncomfortable-to-impossible for many autistic people.

Exude calmness. Autistic people can and will pick up—and echo back to you—your bad mood or anxiety. Even if you’re a busy ER doctor at a city hospital, try to reassure your autistic patient that it is good that they came in.

Do not expect autistic patients to understand the smiley-face-sad-face pain chart. (That chart makes no sense to many of us). Instead, make it an option to ask about pain on a numbered scale.

Ask questions multiple times, in multiple ways. Often autistic people will simply echo what is most recently said. If you ask, ‘Does your ear or your throat hurt?’ they may reply, ‘Your throat hurt,’ when what they meant to say is that their nose hurts. Similarly, if you say, ‘is this happening, yes or no’ they might say ‘or no’ because finding words to communicate with is hard and it’s much easier to just echo what was said.

Try not to use metaphors when talking. Be very literal, and expect the autistic person to be equally literal. (Plenty of autistic people of all abilities are sarcastic and witty, with a dark sense of humor; this is just not likely to show up in a place like the ER because they are under so much stress.)

Don’t use dolls or other apparatus. Most autistic people know perfectly well that the doll is not in pain, and may wonder why you are asking them to point to where it hurts on the doll. The doll is plastic. Who are you to work in a hospital, if you think a doll can feel pain?

Autistic people can have a very low tolerance for absurdity. I honestly thought that the nurses were forgetful or inept when they kept asking me my name and birthday. Wasn’t it right there on the chart? Explain why you need to check.

Explain exactly what you are doing before you do it, and why, and what sensations they might experience.

If you touch a body part, then ask ‘does this hurt when I touch it,’ autistic people may say no, since you stopped touching that part. It doesn’t hurt them at all when you touch the air! Instead, place your hand, preferably firmly, and ask, ‘does this hurt now?’

Do not discourage stimming as a coping mechanism, unless your autistic patient is physically hurting themselves or others

If a person is scripting, ask their caregiver to try and figure out where the script is coming from and what it means. For example, they might be quoting a favorite character who is in a lot of pain to indicate that they themselves are in pain, or echoing a character who is fed up with things to say that they are fed up and want to go home.

Offer a whiteboard or notebook/pen to communicate more easily, as an option (this will not work for everyone).

If you have time, and the person is not in extreme distress, ask the autistic person what they are passionate about. This is an straightforward way to help your autistic patient be more at ease with you. Show as much enthusiasm for the topic as you can genuinely muster: If you do not like trains, there is something wrong with you, (sarcasm), so just like trains already.

A version of these guidelines was shared with the ER that treated the author. While thankfully the author has not had to visit the ER since, they are glad they did make a small difference in this small way.